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Articles
They all see dead peoplebut we (do)nt want to tell you about it:
On Legend Gathering in Real and Cyberspace
JANET L. LANGLOIS
Wayne State University

Abstract: This essay explores the relationship between traditional and digital legend
telling through a comparison of hospice staffs stories of their patients deathbed visions
(DBV), online and off. DBV narratives are typically those in which witnesses report that a
terminally-ill person seems to speak to or otherwise interact with a person or persons, not
seen by others in the room, who have come to take him or her to the other world, however
defined, shortly before his or her own death. The author experienced a field research crisis
when she found hospice staff and volunteers were posting narratives in cyberspace that
hospice staff would not reveal in face-to-face interviews, and wanted to know why. The
following article reports on the authors findings, and discusses how ethnographers,
traditional and/or virtual, might draw on hybridized legend patterns for more complex and
sensitive readings of that storied phenomenon we call death.

Introduction
This article is something of a meditation on legend gathering, both face-to-face and
online, and on how these different field research modes might affect data collection and
analysisand why that might matter.1 These reflections have come to me somewhat late,
given the millennial groundswell of publications about the relationship of traditional folk
genres and new social media, on the one hand, and of traditional and virtual ethnography,
on the other.2 It took a field research crisis, however, for me to examine my own position
vis--vis digital culture. Locating this position is important for me to recognize personally,
of course, but it has somewhat broader import because I represent both older social media
users who were adults when the Internet was first introduced, whom folklorist Lynne S.
McNeill has called digital immigrants, following educational theorist Marc Prensky (2001,
2; cited in McNeill 2009, 81), and traditional ethnographers who were hesitant to engage

New Directions in Folklore

the [Internet] format (Blank 2009, 4), but who are now some of the newest expanding
user groups (Madden 2010).
The Other Worlds Project Background
In 2002, I proposed a qualitative ethnographic project designed to record and
analyze unusual, paranormal, supernatural, or mystical3 narratives in situations that are
health-related, often end-of-life, which my universitys Institutional Review Board
approved under its behavioral research arm. The Other Worlds4 study began when my
long-standing interest in legend studies and my own grappling with serious illness
crystallized in a moment in the spring of that year. In trying to comfort one of my younger
brothers at the memorial service for his wife, I remembered a defining line from folklorist
and medical humanist David J. Huffords chapter, Beings without Bodies, in Out of the
Ordinary: Folklore and the Supernatural:
My conclusion about the rational and the empirical elements of spiritual
beliefits reasonablenessgrows out of my experience-centered study of
beliefs about supernatural assault, mystical experience, miraculous healing,
consoling visits by the deceased to the grieving, near-death experiences, and
haunted houses among others. (1995, 19)
When I told my brother that he shouldnt worry if he felt his late wifes presence because it
was a normal part of bereavement for some individuals, he told me that that was one of the
first things the hospice staff had told him. Our exchange then in that time of sorrow was my
entre into more than a decade of research still ongoing. It prompted me initially to ask
how medical personnel, families and friends of ill persons, and ill persons themselves5
spoke about the return of the dead, a subject that I had previously linked only with
supernatural legends and personal experience narratives connected to place, to haunted
houses, and to other ghostly locations.6 To find answers to that question, I began
conducting field research with individuals in a convenience sample and with staff and
volunteers at a local, free-standing hospice in 2003.7
Once I began reviewing multidisciplinary literature in the course of the study, I
found that the narrative theme of the dead returning, especially as it relates to questions of

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life after death and to the nature of human consciousness, has been addressed in medical
contextsnot without controversyfor well over a century.8 My expanded (and daunting)
goal for the overall Other Worlds project now is to see how folk narrative approaches
(legend work in particular) draw from and contribute to expert and lay discussions about
supernatural experiences and health, especially in stressed-filled times of illness and
accident, impending death, and bereavement. This essay points to problems on the way.
The Crisis
Although researchers disagree on the meanings of revenant accounts in health
contexts, they do seem to agree on three basic kinds of stories in which the dead come
back: 1.) Reports of a bereaved person sensing or seeing the recently-deceased loved one
who has returned from the other world, however defined, to give comfort to the survivor
are examples of what some call After-Death Communication (ADC); 9 2.) Near-Death
Experiences (NDE) narratives tell of a person, presumed to be clinically dead for a brief
period, who regains consciousness and talks about experiencing a sense of peace, going
through a tunnel to a white light and often being greeted by deceased loved ones, religious
figures, or unknown people in an otherworldly setting before awakening;10 3.) Deathbed
Vision (DBV) accountsless known generally than NDE accounts but related to them
thematically at the very least11are those in which witnesses report that a terminally-ill
person seems to speak to or otherwise interact with a person or persons, not seen by
others in the room, who have come to take him or her to the other world shortly before his
or her own death.12
All these narratives and their permutations and fragmentations appear in my Other
Worlds field research data, but I examine only deathbed visions narratives in this essay
because they reveal both my difficulties with traditional ethnography and my initiation into
cyberethnography. I did not initially draw on online resources, but did so when I googled
deathbed visions for the first time in 2011. I chose this subject because it was the
category of story about which I knew least, and the one that the hospice staff13 and
volunteers I interviewed talked about mostwhen they did speak to me. Early in my field
research at the hospice, a certified nurse assistant had leaned over my shoulder and said

New Directions in Folklore

that staff had witnessed or heard about their patients mystical experiences, but that they
did not wish to discuss them with me. I took their reluctance as a given, without examining
their reticence more fully, and allowed it to guide my research in subsequent years. I saw
each questionnaire completed and interview granted as a gift (and still do). Other field
researchers found staff and volunteers of hospices, hospitals, and nursing homes reluctant
to speak to them about their patients supernatural experiences also. Parapsychologists
Karlis Osis and Erlender Haraldsson had written in their classic study, At the Hour of Death,
In the late 1950s [when the authors surveys with doctors and nurses began], professional
circles held much stronger bias against paranormal phenomena than they do now (1997
[1977], 29). Yet psychologist Marilyn Mendoza (2008) found a similar response when she
administered questionnaires to nursing staff in Louisiana and Maryland. She commented in
an interview that even those who witness deathbed visions may be hesitant to say they
have. A lot of people dont talk about this because they think people will think they are
crazy, but every time I mentioned this to someone, they had a story (quoted in Bynum
2009).
So it came as a shock, a complete shock to me, when my initial foray into the
Internet yielded over 250,000 results14 which included websites where researchers as well
as hospice, hospital, or nursing home staff and volunteers discussed those very narrative
events that had eluded me. It occasioned, I must confess, a cri de coeur on my partWhy
will they talk to each other online and not to me? That question (and the fact that I asked it
so late) proves that I am still one of the dwellers on the threshold between the real and the
virtual, unsure of our footing, inventing ourselves as we go along (Turkle 1995, 10; quoted
by Tucker 2009, 67, 79), and not a digital native for whom the real and the virtual merge
(McClelland 2000, 182, as cited in Blank 2009, 2; McNeill 2009, 84). Now I wanted answers
to that question.
The Resolve that Occasioned This Essay
A hospice nurse wrote in her Other Worlds questionnaire that she and another
nurse were doing wound care for a patient, each nurse on either side of the older man,
when the patient smiled at the end of his bed and called out to Johnnyasked where he

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had been, expressed he really had missed him [and] stated so glad you could come for
me then turned toward the nurses and said, Isnt he greatalways loved my brother.
The nurses saw no one else in the room and the patient died the next day (OWIIA.012).15
Her report of her patients deathbed vision showed that he had experienced dual planes of
reality simultaneouslyhe talked to his brother Johnny who had predeceased him and to
his caretakers equally coherently before his death.
In his classic study of deathbed visions, Sir William Barrett, a physics professor at
the Royal College of Science in Dublin and a psychical researcher, discussed the 1924 case
of a young mother who experienced the same duality while dying of heart failure soon after
the birth of her healthy baby. Sir Williams wife, Lady Florence Barrett, her attending
obstetrician at Mothers Hospital in London, reported to him succinctly, She lived for
another hour, and appeared to have retained to the last the double consciousness of those
bright forms she saw and also of those attending her at the bedside (Barrett 1986 [1926],
12; emphasis added).16
In an eerie parallel,17 anthropologist Michael M. J. Fischer (1986) wrote that
ethnographers had to consider bifocality or dual tracking for their field research to be
effective. Field research, like the ethnic autobiography and fiction to which he compared it,
must increasingly be a shorthand for two or more cultures in juxtaposition and
comparison (198-99). Although Fischer was writing before the digital age fully emerged,
his concepts apply to my examination of the intersection of analog and digital deathbed
visions narratives. Double tracking becomes both a model of and for my quest to
understand how and why it might be easier for hospice staff and volunteers to speak of
their patients visions online than to ethnographers and others offline. The following
sections report on my findings. The first section compares DBV experts websites to their
publications offline. The second section compares websites maintained by hospice staff and
volunteers to their face-to-face communication and to experts websites. The concluding
section assesses how ethnographers, traditional and/or virtual, might draw on these
communication patterns in real and in cyberspace for more complex and sensitive readings
of that storied phenomenon we call death (see Gefland et al. 2005, xxiii-xxx, 1-25).

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On the Elite Web as Orientation


My initial mental map of deathbed visions websites corresponds to folklorist Simon
Bronners understanding of the modernist tendency to construct binaries, especially folk
and official, both culturally and digitally (2009, 22). My review distinguished deathbed
visions websites constructed by DBV experts from those maintained by hospice, hospital,
and nursing home staff and volunteers in the trenches.18 Generally speaking, the experts
sites do control content and broadcast information to a passive viewing audience, while
the folk or vernacular sites allow posting, live chat, and free exchange (Bronner 2009,
23). A discussion of three representative sites follows as an orientation strategy to gauge
the range of expert positions.19
Caring for the Dying
One of the first and most stable websites I visited was Dr. Michael Barbatos Caring
for the Dying. The parallel between analog and digital communication is most clear on its
homepage designed to present the authors books as available for purchase. I recognize the
sites top-of-the page banner image of the sun setting in clouds as an iconographic motif in
book covers in the analog world and as a meme in the digital world of deathbed vision
literature, its end-of-day, end-of-life parallel clear.20 The websites essays link contains
information on related topics which are distillations of Barbatos how to books, written
for a broad audience of professional and home caregivers, based on his twenty years as a
palliative care doctor in Australia. The contact link allows individual users to write to
him, but the messages are not public. Furthermore, Barbato posts in the author section
that he has a long-standing interest in unusual experiences around the time of death.
Although not mentioned on the website, Barbato led an interdisciplinary medical
field research team surveying the prevalence of deathbed visions among terminally-ill
patients, whose report was one of the first published in the Journal of Palliative Care
(Barbato et al. 1999). Comprised of medical doctors, social workers, and psychiatrists, the
team analyzed responses to questionnaires sent to one hundred family members of
patients who had died in the Palliative Care Unit at St. Josephs Hospital (Auburn, New

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South Wales, Australia), one month after their deaths. The team reported that the fortyseven relatives who responded noted that patients had a sense of a presence (50 percent)
or of a visual hallucination (5 percent) among other unusual events before they had
passed away (Barbato et al. 1999, 32). The teams conclusions at that time were directed to
professional caregivers and medical researchers:
Even if we cannot understand the basis for the parapsychological
phenomena, the weight of evidence suggests we cannot continue to ignore
them. They are common and frequently misunderstood by the experients,
relatives, friends, and caregivers. As part of our professional role in palliative
care we can help to normalize these experiences by inquiring after and
inviting grieving subjects to talk about any unusual event around the time of
or subsequently to the death of their loved ones.21 (36)
The authority of Barbatos website rests on his teams earlier study for me (Barbato et al.
1999). Though the latter was basically a quantitative research project, it created space for
narrative possibilities by allowing grieving subjects to talk, asking them to give examples
of their relatives deathbed visions, thereby allowing them to record summaries of their
memorates or personal experience narratives of the supernatural (see Dgh and Vzsonyi
1974).22 The websites orientation echoes and extends this earlier research model geared
to patient care, seen most clearly in its deathbed visions essay link where Barbato ties
together the analog and digital worlds through narrative:
Those who have read Reflections of a Setting Sun will recognize the following
anecdote. The words were spoken by an elderly Italian matriarch (Nina)
whose family had insisted she not be told she was dying of cancer. As she
gazed upon a scene, invisible to everyone else in the room, she gesticulated
and, directing her words to the family, she gleefully announced, my bags are
packed, my boat has come, I am going on a beautiful holiday and none of you
can come with me. In this case, it was not Nina, but the family who needed to
have the vision validated and normalised. Once they knew the significance of
the vision they were, for the first time, able to speak openly to Nina about her

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illness and impending death. The vision was ultimately healing for them as
well as Nina.
Barbato notes in his online essay that the cause of deathbed visions is open to speculation
as none of the current theories adequately explain why they occur, let alone their content.
He notes that caregivers should indeed be interested in the debate surrounding life after
death 23 but we at the bedside should not be distracted from a more pressing issue what
does a deathbed vision mean for the person having one?
Horizon Research Foundation
While Barbatos Caring for the Dying website connects one doctors online and
offline work in understanding deathbed vision accounts in terms of patient care and
survivors grief, it downplays his initial survey with patients families and the debate about
the nature of these experiences. By contrast, Horizon Research Foundation: Science at
the Horizon of Life, puts the debate on whether consciousness does or does not survive
bodily death front and center by virtually amplifying the extensive research efforts of
international scientific teams exploring the mystery of what happens when we die and the
nature of the human mind.24 In the sites About Us link, the Editorial Board of the
Foundation, an independent charitable organization based in Southampton General
Hospital (Southampton, Hampshire, Great Britain), notes the mind/body problem:
Despite the current prevalence of materialistic (non-dualistic) theories versus nonmaterialistic (dualistic) ones, this editorial board will provide equal coverage to both since
no theory has currently been proved through scientific research. The Foundations
homepage features an abstract logothe letter H indicative of the line between earth
and sky, between life and death, at the nexus of the medical research it sponsors.25
The place of narrative in this research is a complex one. Although Near-Death
experience experts have amassed thousands of patients accounts over thirty years or more
as research documents (Fenwick and Fenwick 1997; Holden et al. 2009), the websites
raison dtre is to go beyond narrative to study the Near-Death Experiences (NDE)
phenomenon26 through resuscitation studies among others. Within this context, the sites
deathbed visions (DBV) links have morphed during my periodic checks of the site. A brief

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deathbed phenomena (DBP) definition remains on the near-death experiences link


which has the top-of-the-page graphic of backlit clouds in an expansive blue sky I have
come to expect. A Death Bed Vision Study, accessed through the research zone link in
the past, is no longer accessible on the website, however.27 The studys eQuestionnaire was
presented to potential participants as part of a web-based investigation using online
research tools to study the prevalence, phenomenology, and impact of End of Life
Experiences (death bed visions). The online study was designed to utilize the power of
the Internet to extend the sample, and to complement ongoing field research studies in the
United Kingdom.
I had known of two on-the-ground studies done by the online DBV research teams
earlier, both published in the American Journal of Hospice and Palliative Medicine. The first
examined the effects of deathbed phenomena (DBP)28 on the palliative care team at the
Camden Primary Care Trust in London (Brayne et al. 2006). The second compared the
Camden pilot study results to those found among nurses and care assistants at a
Gloucestershire nursing home (Brayne et al. 2008). In both analog studies, the team
administered a five-year retrospective questionnaire with a follow-up taped interview, and
then one year later, administered a one-year prospective questionnaire, testing to see if
staff perceptions were altered by their participation in the survey. The eQuestionnaire,
similar to the ones used offline, was also based on the Barbato model among others.
In their earlier ethnographic studies, the teams recorded deathbed phenomena
similar to accounts I had recorded in the Other Worlds project. Staff reported patients
having the vivid dreams and visions of deceased loved ones and religious figures under
discussion in this essay; patients appearing to wait to die until the arrival of beloved
relatives;29 staff and patients seeing spectral children, animals, insects, and birds in
patients rooms;30 and staff experiencing changes in temperature in rooms where patients
had died (Brayne et al. 2008, 199-201.)31 Team findings also included staff attitudes about
deathbed visions, essentially noting occupational stress factors. Staff stated that they had
trouble distinguishing their patients deathbed visions from drug-induced hallucinations,
that they were ill-prepared to support patients with these experiences, and that they
were reluctant to discuss these DBP [deathbed phenomena] amongst themselves or with

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others outside their team (Brayne et al. 2006, 19-24; 2008, 203-4). One of the
eQuestionnaires stated goals, related to these earlier results, was to find an answer to this
question: How easy carers find it to talk about such experiences, or whether they feel they
will be laughed at or ridiculed if they talk about the experiences in an ordinary social
setting. The results of the eQuestionnaire have not been published, online or off, to my
knowledge.
Do the Dead Greet the Dying?
Narrative as testimony takes center stage in a dualist position in the deathbed
visions debate in the last website (or series of websites) I examine. In the literature review
posted for prospective participants in the now-defunct eQuestionnaire discussed above on
the Horizon Research Foundations website, teams traced the renewed medical interest in
deathbed visions, at least initially, to Dr. Elisabeth Kbler-Rosss 1971 article, What Is It
Like to Be Dying? first published in The American Journal of Nursing.32 Carol Zaleski calls
the Swiss medical doctor, psychiatrist, and thanatologist credited with bringing the Britishbased hospice movement to the United States, the revered but scandal-haunted apostle of
humane treatment for the dying and their families (1987, 97).
Kbler-Rosss (1969) On Death and Dying: What the Dying Have to Teach Doctors,
Nurses, Clergy, and Their Own Families is still the gold standard for treatment of the
terminally ill and their caretakers. Several hospice staff and volunteers I interviewed in the
Other Worlds project noted that her book, as well as her talks and workshops, brought
them into hospice work. One volunteer and spiritual care coordinator, who had received
the book after her mother died, said that she was very impressed and touched with the
simplicity and beauty of her premise, and that is: If you want to know what a dying person
wants and needs, ask them. And then, unique in our society, listen to what they say
(OWIIA.025). Kbler-Rosss subsequent work (and those of other near-death researchers),
positing that the visionary testimony of her patients proves beyond a shadow of a doubt
that death is but a doorway to a better world (Zaleski 1987, 97), has indeed been
contested. Surgeon Sherwin B. Nuland writes, for example, that he does not doubt the
existence of the near-death phenomenon, but finds that the comfort and peace, and

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especially the conscious serenity, of final lingering days on earth have been vastly
overestimated by many commentators; we are not well served by being lulled into
unjustified expectations (1995, 138-39). A hospice nurse told me that the hospice
movement has gone beyond Kbler-Ross, and I wonder now what she meant and why I
didnt ask her more (OW IIA.014).
David Kessler, Elisabeth Kbler-Rosss protg, co-wrote two books with his mentor
and was with her at her death in 2004. He has a strong presence both online and off. It is
his book Visions, Trips, and Crowded Rooms: Who and What You See Before You Die
(2011[2010]) and its online repercussions that claim my attention here. In A Note to the
Reader, Kessler describes the contributors to the book as healthcare professionals and
clergy members as well as those who have lost loved ones who shared their firsthand
accounts of deathbed visions with the author in the hope that readers will come away less
afraid and with a deeper understanding about what happens in our final moments in life
(xi). He concludes, This book is simply a report from the front lines, featuring stories of
average people, in their own words, experiencing extraordinary events (xi). Visions is the
first in my discussion here that deals overtly with folk narrative and with religious as well
as secular concepts of the afterlife, represented most clearly by the accounts clergy shared
with Kessler, but related to broader spirituality and health movements.
Intertwining of real and cyberspace emerges in Visions Afterthoughts. Kessler
opens with an astute summary most current writers can appreciate: Books are usually a
one-way conversation in that the author shares information with his or her readers.
However, he continues, the Internet has drastically changed all that. Today, I can write a
book such as this one, or post an article online, and draw almost immediate responses to
the work. He notes that he received countless e-mails and thousands of comments about
it, and was amazed that he could receive more than 1,000 pages of comments for a book
that was only 160 pages (2011, 156).
The article (drawn from his book) that Kessler did post online, Who and What You
See Before You Die, was first posted on Oprah Winfreys website, where Kessler had been
a regular Spirit contributor, on June 22, 2010. This popular article was re-posted with the
title Do the Dead Greet the Living? on television news channel CNNs website on October

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19, 2010. Due in part to the response to his book and online article, Kessler was
interviewed on CNNs American Morning shortly thereafter in conjunction with
discussion of Clint Eastwoods film, Hereafter (2010), in which a reluctant medium
converses with the dead. Kessler, along with other NDE experts, had been a consultant on
that film. On the program, he stressed the need for people to recognize the validity of
deathbed visions.33 He told his own moving personal experience narrativehe saw the
comfort his dying father drew from seeing his deceased wife, Kesslers mother, waiting for
him. The video clip was posted on CNN.com, October 20, 2010, and on YouTube, April 11,
2011.
Kesslers own thoughts about this online interest and feedback point to an
intersection of the elite and vernacular webs that blurs but does not entirely erase my
initial binary mental map of cyberspace. He simultaneously confirms his own status as a
celebrity expert in the social media and recognizes that comments constitute a
democratized virtual space where folk can interact with the institutional.34 He presents this
process of debate in a way that is remarkably legend-like, if not legendary itself (Dgh and
Vzsonyi 1973), which foreshadows the patterns I explore more fully in the next section on
the folk web. Moreover, he notes positive online feedback first: There were stories,
accounts from health-care professionals, and even video by family members describing
what theyd witnessed that gave evidence for life after death (Kessler 2011, 159). He then
discusses negative feedback: The article on CNN.com also served as a forum for those who
dont believe in deathbed visions to voice their opinions (2011, 159-60). He concludes by
stating his own position: Im going to believe the words of the dying over the beliefs and
doubts of the living who havent lost a loved one or worked in a hospital or hospice setting
(2011, 162).
The deathbed visions experts websites reviewed here have been constructed by
researchers who have done fieldwork (the first two quantitative, the last qualitative) in the
everyday world with patients, their families, doctors, and staff. They have professional
interest in deathbed visions accounts, despite their different theoretical positions,
methodologies, and perceptions of the place of narrative in their research. All the
researchers reviewed here have used the Internet to enhance their goals. Their websites

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are platforms for announcing their projects and promoting the workshops, forums,
lectures, and publications that define them as experts. Yet their professional deathbed
vision websites can have a transgressive folk web quality themselves, especially if their
agenda is a double one (Bronner 2009, 22). To support dying patients, their families, and
their caregivers by normalizing patients deathbed visions, as the Caring for the Dying
website does, is one thing. But to consider proof of survival of human consciousness after
physical death, whether through rigorous scientific experiments, as the Horizon Research
Foundation website does or through patient or witness testimony as Do the Dead Greet
the Dying websites do, is another. That goal, however differently expressed and contested,
keeps these websites out of the mainstream (either on the fringe or on the cutting edge
dependent on ones perspective).
These websites, no matter their status, do reveal the major debates about life and
death that have remained constant, although paradoxically shifting and nuanced over time,
in recent discussions of near-death and end-of-life experiences in medical and public
forums.35 Within this broader dialectical frame, the websites report staff fear of ridicule,
either in speaking about their patients deathbed visions at all or as evidence of an afterlife,
which says something to me once again about the staff reticence I encountered. David
Kesslers websites also present the explosion of online commentary which points to the
power of computer-mediated communication to draw posters to the Internet.
Dialectics on the Folk Web
I turn now to the vernacular web constructed by hospice, nursing home, hospital
staff, volunteers, and other caregivers themselves concerning deathbed visions to see if and
how these dialectics play out in the workplace and online.36 I start with the assumption that
these websites, consisting of commentary, blogs, chat rooms, forum discussions, YouTube
videos, etc., do express these occupational folk cultures generally as well as on-the-ground
attitudes towards deathbed visions particularly. The sheer number of sites gives me pause,
however. To traverse this virtual cultural landscape in the space of an article section is not
possible, but I turn toward two quite different websites, reached through a Google search,
that are my supplemental treasure maps indicating the terrain.

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Ask the Hospice Worker


Ask the Hospice Worker is a thread in one forum, now archived, of over 600,000
forums on different subjects administered and moderated through The Straight Dope
Message Board website, designed to present and debate information as it has been fighting
ignorance since 1973, according to its logo.37 The original poster on the thread, a SDMB
guest in his early thirties living in the Pacific Northwest, agreed to explain his job as a
hospice worker because he believed it was not well understood by the general public, and
he supported the goals of the SDMB online community. He noted in his 2012 opening post,
While most of my peers were flipping burgers, pumping gas or doing grunt work for
construction crews, I was holding frail hands, cleaning human mess and, inevitably,
performing post-mortem care, ultimately as a certified nurse assistant in a home hospice
program. He stated that he and most of his co-workers keep our mouths shut regarding
our jobs, that his wife and children didnt really know what he did for a living, and that it
took him a long time to acknowledge what hospice work was.
Doing online what he could not do offline, he said that he would answer any
questions posed38 as fully as he could without breaking HIPAA rules protecting patients
privacy.39 Subsequent posters did ask him many things: What was the job like? How was
palliative care managed? What did he think about physician-assisted suicide? Only one
guest user asked him about deathbed visions:
Have you ever witnessed a dying person have Deathbed Visions? From what
Ive heard, they are common in the hospice environment. I dont know what
your beliefs are as far as what happens when we die, but have you seen
anything, well spiritual during the dying process.
The original poster responded in part:
Yes, deathbed visions are common. Im fairly agnostic, but Ive not found any
explanations for these. I cannot even begin to explain the experience
[W]hen someone is in a deep coma and has been for several weeks, revives
for an hour or two and sings hymns or has conversations with an empty
room before passing away, the effect on an observer is haunting. Ive seen

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more that one of my co-workers leave the building during these visions; they
couldnt handle what was happening.
His response is a microcosm of the individual and group dialectics operating across the
profession. It shows that not all hospice workers see their patients visions as positive signs
of the afterlife, although many (if not most) hospice workers online and off do, but may see
them with some ambivalence or uncertainty.
The original poster made it clear that hospice workers found it hard to speak to
those outside the profession about their jobs in general; he didnt make it as clear if, how,
or when they speak to each other, although his last post suggests that his occupational
knowledge rests on his own job experience and on some discussion with his co-workers.
He does corroborate experts findings in the last section that hospice workers were
reluctant to discuss these deathbed visions both on and off the job, yet he was able to speak
online, which suggests that the stated goal of the Horizon Research Foundations
eQuestionnaire to expand the sample was a reasonable one. His posts also blur the binary
between elite or institutional and folk in yet another way as his online position shows him
to be an expert. He uses vernacular authority to shape the perspectives of other members
within the online community (see Blank 2015; Howard 2008b; 2011; 2012; 2013). What
this poster doesnt say, however, points me to conversations amplified on the web in the
next site.
Allnurses.com
Allnurses.com is an extensive website designed as a nursing community.40 Its
homepage logothe name of the site, with three overlapping conversation bubbles
visually reinforces that it is a place where nurses and nursing students talk. Despite links
to articles and books by experts and to college and career opportunities, this social
networking site is primarily a space where nurses can seek advice from peers in various
discussion forums. Deathbed vision threads appear in three General Nursing
Discussions ranging from 2006 to 2011, in two Hospice Nursing Discussions in 2010 and
2011, and in a 2011 Nursing & Spirituality Discussion.41 The narratives embedded in
these six threads are very like the deathbed visions accounts already discussed in this

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essay. They are usually nurses brief, first-person reports that may begin with an
orientation including the type of facility, the role of the caretaker, or the patients
condition; then continue with a description of the patients vision no other person can see
as their complicating action; and often end with an evaluation including corroboration of
the experience by a family or staff member, and/or a general statement or question of
belief and care.42
My analysis of participants comments shows that forum users have debated the
frequency, the etiology, and the meanings of deathbed visions their patients experience.
Most agree with the original poster from the Ask the Hospice Worker website that
patients visions are common, although the number of experiences individual nurses have
had or witnessed varies. In response to the query, Have you taken care of any patients
whove had any [deathbed visions]? opening a 2006-2007 General Nursing Discussion
DBV thread, one users memorate has familiar patterns:
The first time I had a patient who was apparently having one was a lady who
kept looking straight ahead at the wall & having conversations with someone
named Mary that no one else could see. Come to find out from her adult son,
Mary was his aunt who was deceased. The patient died a few days later.
(emphasis added)
Another user responded, Frequently. In our palliative care, we see many patients who see
relatives or visions before they pass. Another noted, I have seen many patients in almost
25 years at the bedside, who have appeared to be conversing with invisible beings, and
were at peace with this. Another noted, Ive seen this too many times to count.
Yet other participants were less certain. One wrote, Ive experienced it a few times
being a new nurse I didnt really think anything about it And another responded, I dont
know what to think about supposed deathbed visions. Ive been around a number of dying
people and Ive never seen anything from them like talking to people who we couldnt see.
The last poster went on to give a counter- or anti-legendary account which contains its own
dialectics (Dgh and Vzsonyi 1973). S/he once had a dying male patient who would tell
nurses that he saw a man come into his room every night at the same time. While one of his
or her colleagues would freak out and run around telling everyone the angel of death was

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21

visiting him and it would be anytime now, s/he noted that the patient himself looked at
us like we were crazy and said flatly, its a shadow
The most hotly-debated issues, however, concerned the etiology of deathbed visions
and their corresponding meanings for patients and for caregivers. In a 2010 Hospice
Nursing Discussion DBV thread, Do you believe in life after death? the original poster
asked: What is your take on DBVs [deathbed visions] and the afterlife? All nine
respondents agreed that their patients visions corroborated their own belief in life after
death. One posted: yes. Ive seen too many patients speak to deceased loved ones. Ive had
patients tell me, there is an angel at the foot of my bed that tells me Ill be going soon
These are not delirium patients. The last users comment that his or her patients were not
hallucinating hints at the debates that had erupted in other forum discussions.
The original poster in a 2008-2010 General Nursing Discussion DBV thread had
asked what nurses had experienced and felt regarding those ready to pass being able to
see something just prior? In your opinion is there more after this? s/he continued. The
opposing opinions of two participants in the ensuing discussion made the dialectics starkly
clear. The first commented, I dont believe there is anything beyond. Ive been around a lot
of dying people and the visions can be explained by the dying brain shutting down The
second responded, Im sorry to disagree, but you are out of touch, BIG TIME. I have been a
hospice nurse for 15+ years and no matter what you think, do not EVER underestimate
what a patient is going through at the time they are going to pass onto the other side And
the first came back, Well, wanting something to be true and getting annoyed when
someone challenges it doesnt make it anymore true. Ive seen death and dying in spades
during my time as a LTC [long-term care] and private duty nurse Other participants
duplicated and so corroborated their discussion, reflecting the materialist/dualist debate
discussed in the previous sections.
Yet participants comments also included a corollary debate about patients good
or bad deaths that was quite different from the presentation of only positive deathbed
visions in the experts sites reviewedand, for the most part, in my own Other Worlds
field research data as well. Those users who did discuss their patients peaceful or
frightening visions and subsequent deaths on this thread tended to frame them in the

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relatively-standard dialectics of Christian eschatology in which good patients heard


music, saw angels and other religious figures, loving relatives, and/or a beautiful place
while bad patients encountered the Devil, demons, or spirits of those whom they had
killed, and/or Hell itself. A hospice chaplain to whom I spoke, for example, noted that one
patient he had counseled had appeared to reach out his arms to his angel who had taken
him home, while another patient had told him before his death that he went to an awful
place where there was fire and dismembered bodies (OWIIA.019).
Another exchange on this 2008-2010 General Nursing Discussion DBV thread
disturbs on several levels. A posting nurse wrote, Ive seen numerous patients reaching
out their hands in the direction of the sky. They seem to be wanting to go with someone but
I dont see anyone in the room but also commented, I also had creepy experiences that I
cannot forget. But I dont want to scare anyone so Ill just keep it to myself. Another
followed who did not keep it to him/herself:
I also have seen many of the beautiful peaceful scenes just described. But,
(yall knew it was coming, didnt ya?) I saw one young man, early 20s, losing
to cancer who woke up in the middle of the night SCREAMING at the top of
his lungs HE is coming to get me HE is coming to get me!!!!,pointing to the
crucifix on the wall and SCREAMING
A third responded: Yikes, that was pretty horrifying especially for him, Id bet. I have read
about some people who have had near-death experiences in which they recount hellish
visions, I hope its the drugs in that case.43
Certainly this deathbed vision account is not the typical positive story, nor is it the
less well-known but typical negative story either. Here, the patient, simply a too-young
man dying before his time, appears to be terrified of death, of a strangely-avenging Christ
coming for him, or of something else, but it is not possible to know for sure.44 The last
posters comment that s/he hoped this patients experience was a drug-induced
hallucination and not a vision of the afterlife to come is a not uncommon one in which two
dialectical positions intersect: a positive deathbed vision is seen as a spiritual experience
while a negative one is seen not as hellish but as hallucinatory caused by medication. In any
case, the patient suffered pain, anxiety, and terror before his death.

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I see now that the hospice staff I interviewed for the Other Worlds study told me
about primarily positive deathbed visions. A hospice nurse described a patient reaching
into air with hands turned upwards (palms up). When asked who he was talking to &
reaching towards, pt. [patient] stated, Im talking to God (OWIIA.002). A hospice
coordinator recalled that she had heard from a hospice nurse that there was a gentleman
who was active [actively dying]he kind of drifted off a little bit, you know? And, when he
had woken up, he had said, Wow, those roses smell beautiful! (OWIIA.003). I presume
that they were protecting me, perhaps themselves, from accounts of negative visions,
another reason not to speak. Only two staff shared accounts that haunt me still in this
regard. One spoke of a young woman, also a cancer patient, who saw a bright light at the
end of her life, but told relatives that she was afraid of it and didnt want to die and leave
her small children (OWIIA.003). Another noted that she once had to push a dying patient in
her wheelchair from room to room in the hospice because the patient saw her deceased
mother always moving away from her and wanted to catch up (OWIIA.005). That these
three patients were distressed when seeing Jesus, a white light, and a deceased mother
respectively points to deathbed visions accounts that should be prototypically peaceful, but
are terrifying (Bush 2012; Greyson and Bush 1992, 99-101).
Another corollary but important debate about deathbed visions emerged in the
2008-2010 General Nursing Discussion DBV thread as well, one in which participants
questioned how the beliefs of caregivers compared to the beliefs of their patients and
families, and how similarities or differences in belief impinged on hospice care. One
posters response touches on all these issues. S/he opened by agreeing with a materialist
medical model:
I believe in the power of the human brains ability to placate the dying
patient by releasing a rush of neurotransmitters and endorphins as it dies,
resulting in powerful and occasionally disturbing auditory and visual
hallucinations in their last moments.
S/he continued, however, by recognizing that positive deathbed visions could have a
comforting effect: These hallucinations and emotions along with the patients and
families expectations of creed-dependent afterlives often bring comfort and joy to all

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involved, and should not be discounted or denied. Here the poster turned from the
medical model of etiology to a hospice model of care which is to support patients spiritually
and emotionally despite divergent scientific and religious beliefs.45 But that doesnt mean I
have to believe [deathbed visions] are supernatural in origin, the poster concluded,
disagreeing with other discussants who shared patients and families expectations of
creed-dependent afterlives. I guess that this web user has wrestled with the dialectics
widespread throughout hospice care, originally designed to offset the traditional medical
model, and now more often incorporated within it in hospital settings (Siebold 1992). This
DBV thread ended with: We will likely have to agree to disagree on this point.
David Kessler (2011) had presented these dialectics as debates between hospice
workers and patients families who have witnessed deathbed visions that confirm the
existence of the afterlife, on the one hand, and those individuals in the medical field and in
the general public who havent had such experiences or discount them, on the other (15962). These folk websites suggest, however, that these debates are more complex, more
messy, and that they exist in various ways within hospice cultures as well, both online
and off, a situation already noted by the professional researchers in the previous section,
including Kessler himself, when they evaluated hospice staff and volunteers troubled
attitudes toward deathbed visions.
What folklorist Robert McCarl has called the canon of work technique, that
unwritten code that members of an occupation use as a standard for their on-the-job
performances (1986, 71-72), is overlaid or fragmented here by contending concepts of
belief and hospice nursing practices. A participants comment in the same allnurses.com
2008-2010 General Nursing Discussion DBV thread indicates two types of patient care
that s/he practiced, the former a spiritual one s/he may or may not wish to speak of in the
workplace, the latter a medical one that is standard: Beyond the visions for the patients, I
have felt a definite presence in the room with me as the patients pass. Of course, I have to
check the pulse technically, but the feeling which I cant describe otherwise has never
steered me wrong. A hospice nurse noted something similar: I personally have had 3 pt
[patients] come to me in dream state at exact time of deathbefore I received call to
inform meI knew already pt [patient] had passed onfelt presence in room when no one

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but pt [patient] & myself in room (OWIIA.012). The institutional and the vernacular are
juxtaposed here (see Blank 2013b; 2015; Howard 2012; 2013).
A second participant in the same General Nursing Discussion DBV thread contrasts
his/her silence in either the workplace or other social situations to web discussion on endof-life experiences once again:
Being a hospice nurse, I too have seen/shared experiences that Ill bring to
my grave. [O]therwise, in this society, Id be committed. [S]o while there is no
doubt in my mind re[:] an afterlife, I strongly believe that [posters] have
every right to believe what they do, and be able to express it w/o
condemnation.
These posts confirm for me that the folk realmrepresents a participatory process that
some posters refer to as the democratic or open web (Blank 2009, 23)46 in contrast to the
more structured elite sites discussed in the previous section and to the more structured
workplace that has a hierarchy of job descriptions in both medical and administrative lines.
I recognize that field researchers in the medical field (as in others) are often aligned
with management and with experts in general despite their best efforts. I received
permission from the hospice CEO and managing team to conduct research with their staff
and volunteers, as I needed to do for IRB compliance, but the management stipulation to
interview staff onsite may have had some inhibiting effects. This alignment may have made
it difficult for staff to speak openly if their perceptions and interpretations of their patients
deathbed visions contravened specific facilities patient care guidelines (especially HIPAA
rules), or, alternatively, might be open to ridicule in other medical and social contexts.47 In
contrast, users on the open web can shareand contestinformation horizontally or
laterally across similar nursing positions in a range of facilities whose specific names and
locations are kept confidential in the discussion threads.
Standing on the thin place between this world and the next, between traditional
fieldwork and the folk web, I now see more answers to my question why that prompted
this article. Website users in hospice, hospital, and nursing home forums can agree to
disagree on deathbed phenomena in cyberspace in ways that do virtualize and mimic the
dynamics of the legend process (Blank 2012, 6; see also Blank 2007), its dialectics long

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noted as a defining characteristic of the folk genre.48 Because some staff chose not to, or
cannot, speak of these end-of-life experiences in the work place and/or to an ethnographer,
the open web somewhat paradoxically allows them a venue for communicative practices
not always possible in specific real-life contexts.49
Revelations
In threading my way through deathbed vision discussions on allnurses.com, I
stumbled across posts that opened up vistas I had not expected on my virtual journey.
Another sort of double tracking emerged. The first track concerns a genre question: how do
deathbed vision narratives fit in the analog and digital realms of storytelling? The second
track concerns an ethnographic question: What is the moral space of the ethnographer in
both these realms?
Ghost Stories
In 2011, an allnurses.com guest poster asked the same questions about the
meaning of deathbed visions in two DBV threads, one in a Hospice Nursing Discussion
and the other in a Nursing & Spirituality Discussion. S/he wondered whether there was
an afterlife or not, and if his or her recently-deceased father would find peace and joy there,
having been an angry man who was an agnostic. S/he thought that hospice nurses could
give answers that readings and discussions with others in his or her church had not: Id
like to hear real experiences from real hospice nurses on death bed visions and
experiences. Then, first in one post and then in another, s/he continued with questions
that caught me off guard:
And why are there so many ghost stories in allnurses? Could these be souls
that didnt make it to the light? Or could they be real demons? [] And what
about the huge ghost stories thread? What do you think is responsible for
ghosts? Evil spirits, demons, lost souls? And how could a soul get lost?
Although I have built a case here that deathbed vision narratives are, or are like,
supernatural legends or memorates, both in their theme of the return of the dead and in
the dialectics of their performance online and off, and can be examined within that

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theoretical frame, I had not expected web users to make similar associations. I found
myself, somewhat surprisingly, uncomfortable with the connections that brought me back
full circle to the traditional ghosts and revenants with which I began this essay (see pp. 6
herein). I turned toward the huge ghost stories thread titled Whats your best nursing
ghost story? in a General Nursing Discussion. Something like a lost soul myself, I
wandered through the complex web of stories participants have shared since 2000 about
their patients and family members deathbed visions, near-death experiences,
premonitions of death, haunted hospice and hospital rooms or buildings, signs deceased
patients gave their caregivers through flashing lights and call bells ringing, and more.
Users here seem less interested in questioning the meanings of these on-the-job
experiences than in the stories and in storytelling itself. One noted, after telling a story of
obstetric nurses smelling the scent of roses in a labor and delivery unit of a hospital when
a mother or her baby was having difficulties, and seeing rose petals fall if the mother or
baby died, I do have other stories that are creepier than these, and another responded,
That was a good one, please tell more. Another said, I havent actually seen any ghost but
my unit has some ghost stories Another reported that s/he had heard older nurses
telling their stories about ghosts In a certain way, this thread, detailing nurses extensive
storytelling online and off, confirms nurses freedom to speak on the web, but contradicts
my sense of their offline silence developed in the preceding sections so needs to be
addressed, if not explained.
Perhaps most participants see deathbed vision narratives and ghost stories as
interchangeable or at least related by default as they have posted on this thread. Some,
however, seem to see their deathbed visions (DBV) accounts as similar to but different
from ghost stories. One began, Not so much a ghost story, but a story about when my Mom
died a year ago, before detailing the succession of deceased family members to whom the
dying woman spoke. Another was uncertain, noting, I dont know if this qualifies as a ghost
story but here it is, before posting his or her moving experience of feeling a cold chill every
day at 12:15 p.m. for a week before a young patient died in his or her arms at that time.
I am of two minds about the place of deathbed vision narratives in ghost story
classifications myself. The similarity of story theme and communication style I focused on

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earlier can be undercut by what I also see as the different shapes of the narratives and their
different contexts. Deathbed visions accounts presented so far do have their own shapes as
noted earlier (see pp. 19 in this essay), set within the context of caretakers discussing their
patients numinous end-of-life experiences. Yet some DBV narratives do take on shapes of
the classic ghost story, either in their orientation sections, in their complicating actions or
in their concluding evaluations. A nurse, participating in a DBV thread in a 2006-2007
General Nursing Discussion, for example, posted an account of a dying patient telling
staff, when they asked her to whom she was talking, that it was a little girl who kept coming
to see her. The nurse concluded, We told her niece about it the next morning when she
came to visit, and she said several of their family members have also talked of a little girl
dressed in white coming to see them soon before death. The posts evaluative conclusion
suggests a family legend and is a widespread ghostly motif (E422.4.4 (a) Female revenant
in white clothing; E425.1.1 Revenant as lady in white).
Elderly patients seeing children whom others cannot see has been reported on all
the deathbed visions and ghost story threads I examined on allnurses.com as well as in an
ethnographic study of nursing homes discussed earlier (Brayne 2008, 199-200) and in my
own Other Worlds research. I briefly compare texts of two nurses accounts, one posted
online in a DBV thread in the 2006-2007 General Nursing Discussion, and the other told
to me during an interview (OWIIA.020) that further illustrate generic complexities and
intersections in these dual worlds of storytelling:
ORIENTATION
From poster on allnurses.com:

From interviewee:

I worked for five years in a high care aged care


facility that used to be an old county hospitalthe building would have been close to 90 years
old.

I was told that [the nursing home] used to be


a Catholic childrens hospital ward before it
was a nursing home...

Both nurses begin with the legendary equivalent of It was a dark and stormy
night, noting that their respective nursing homes were superimposed over past
hospitals, a staple of ghostly legends and horror tales, that sets the stage for the
action to follow.

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29

COMPLICATING ACTION
From poster on allnurses.com:

From interviewee:

One evening a lady who was in the early stages


of dementia refused to eat all of her dinner,
telling me that she had to keep some food aside
to feed the two children that had come into her
room the night before. I didnt think too much
of this thinking that it must have been the
dementia setting in. The next night she did the
same thing again and left half of her meal for
the kids, except this time she was really cranky
complaining that the children had been
naughty and kept her awake for half of the
night.

But a couple of the patients that I had


worked with would stop wanting to come to
activities, and just stopped wanting to go to
dinner, and things like that. And when you
would ask them, you know, Why dont you
want to go? they would say, Well, Im busy.
I have to watch these kids. And, of course, I
would ask them, What kids? because I
could not see the children. It was a patient
whoshe was the sweetest old lady Id ever
seenbut she only had one leg. Im not sure,
I cant really remember what happened, but
one day we found her out of bed, and she
said she had fallen. And we asked her, you
know, Why did you try to get out of bed?
You know you only have one leg at that. You
need help. And she said, Well, those kids
were just runnin around and I just, I had to
go get em.

Two rooms down a frail resident who didnt


have dementia was in a real state and scared to
have the light off because the night before 2
kids who were covered in bandages had come
into her room during the night and stood
staring at her while she lay in bed.

Both nurses remarkably similar descriptions of their respective patients


encounters with ghostly children shift the DBV accounts focus from the more usual
take away function of patients deceased loved ones to the antics of children who
may be both signs of impending death and residues of earlier tragedies, ghost story
themes as well.
EVALUATION
From poster on allnurses.com:

From interviewee:

By this time I was getting goose bumps and


mentioned something to one of the other nurses
whod worked [there] a lot longer than me and
wasnt at all surprised at what Id told her. The
nurse I was talking to said that apparently back
in the early 70s a family had crashed their car,
the parents had died instantly and their 2
children had been badly burned and brought to
the nursing home when it was still a hospital.
The kids ended up dying and over the years
different residents with and without dementia
had reported seeing them.

Well, just from hearing other people talk; it


wasnt just my floor. On different floors you
would hear different things. The nurses
would claim that they would hear babies cry,
or just kind of, I guess, moans and groans that
people would expect to hear or something.

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Both nurses conclude their accounts with summaries of nurses talking story to
each other in real and virtual time. In the online nurses account, a senior nurse gives the
poster the back story to the present haunting, familiar in ghost story telling and legend
tripping, which corroboration suggests that the poster moved from assuming that the
children are hallucinations of elderly persons suffering from different stages of dementia to
believing they may be of supernatural origin. The nurse I interviewed sets her account
within the general framework of nurses talking on different floors, making references to
the widespread legend of the crying baby and moans and groans associated with
ghostly encounters (E402.1.1.3 Ghost cries and screams). Her own personal experience
narrative corroborates the older nurses stories: But one night I was in the hallway and I
saw a balloon, and then all of a sudden the balloon just like shot down the hallway like a
little kid was running with the balloon
Ghost story comparisons suggest that there are a number of deathbed visions
narrative styles ranging from the most minimal account to a hybrid DBV/ghost story to
full-blown legend performance, dependent on contexts closer to or further removed from
nurses dying patients. In the allnurses.com 2011 Nursing & Spirituality Discussion DBV
thread, one participant wrote, I hesitate to share any visions that my patients have had,
simply because those are the most intimate moments of their lives I respect and honor
that privacy. Other staff chose not to speak in the workplace or to an ethnographer but
chose to speak online as evidenced in Ask the Hospice Worker and allnurses.com sites
in the last section. Hospice staff and volunteers, in particular, experience specific on-the-job
stresses, not the least of which is the loss of their patients, which may make it difficult to
talk story in real time.50 Still others shared stories with co-workers online and off that
have the patina of twice-told tales as evidenced in this subsection on ghost stories. Staff
ghost stories may be part of new members introduction to their respective facilitys
culture. When patients deaths are not immediately imminent, as is true in nursing homes
for the most part, storytelling seems to flower for its own sake in traditional and virtual
worlds.

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31

Ethnographies
In 2011, an updated deathbed visions thread opened in a General Nursing
Discussion on allnurses.com. The original poster had read all previous posts and noted,
It was very intriguing hearing all these deathbed vision stories from hospice nurses point
of view. S/he started a new thread for fellow new members and old ones too to post their
experiences with their patients having deathbed visions and passing on to the next life.
S/he concluded with a request, Whatever story you have, new or old, please dont hesitate
to post it here (emphasis added). When responders tended to post opinions, not
buttressed by specific stories, the original poster requested again, Thanks guys for all the
responses so far. I read them all and Im intrigued. But what Im looking for is more hospice
nurse stories about your patients (emphasis added). His or her double request prompted
another participant to comment:
Im curious. You just joined today and your first post is requesting info about
very specific type situations. Are you gathering these stories to include in
some sort of publication or project? Its a good topic, just makes me wonder
whether there isnt more to why you are asking, thats all.
The original poster did not respond.
I had a double rush of feelings. Because I had not contacted participants online or off
as this possible virtual ethnographer had done without attribution, I felt virtuous, on the
one hand. But since the original poster and I were essentially mining the same data base for
hospice workers and nurses stories without their knowledge, s/he more actively and I
more passively, I felt an associated guilt, on the other hand. I imagined my discussion with
the astute user who asked if a publication was forthcoming, explaining that I did, indeed,
have my university IRBs permission to examine archived material online without consent
needed as the archived posts were publically published, and I was not conducting online
participant observation defined as research, but I wondered if I were protesting too
strongly.
The above exchange makes me mindful of folklorist Montana Millers cogent plea for
ethnographers to consider evolving online ethical guidelines as seriously as they have

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offline ones (2012). I am particularly struck by her discussion of oral expression and
archived text, tangled in the new ethics of the web (215-17), because it applies directly to
my own cyberethnography of archived forums. The forums, indeed public in the sense
presented above, also do have a private quality because they reveal information that
hospice and hospital staff chose not to speak of in the workplace or to an ethnographer. I
defined them as folk or vernacular webs for that very reason. The stories embedded in
the discussion threads can be seen as both public records of legendary texts and as
examples of what Miller calls a new form of orality or folk speech (216) on the web. If the
latter designation predominates in future discussions, should I attempt to obtain consent
from those posters even though I do not need to do so? Angela Cora Garcia et al. (2009)
confirms that the ethical landscape for the use of online archival data is not yet clear
because of the complexities of public and private designations (74-75).
Lurking on the folk web can yield incredible information for the ethnographer,
information that is not necessarily accessible in the more formal face-to-face interviewing
situation, but is it all right to do so? I did try to protect the privacy and anonymity of forum
users by not using their addresses or fully quoting their posts, as hard as it is for me not to
use full verbatim texts as I was trained to do (Garcia et al. 2009, 76-77; Miller 2012, 22123). If I, too, had opened up a thread as a guest poster on Ask the Hospice Worker or on
allnurses.com, once I had IRB approval for interactive research, would I have been a
poseur? The consensus seems to be that there is not presently a consensus on how best to
represent oneself as a researcher to online communities that is both practical and ethical
(Garcia et al. 2009, 76).
My article falls under what Garcia et al. (2009) categorizes as one with multimodal
social worlds as research settings that call for both traditional fieldwork and computermediated communication (55-56). In fact, that bridge between analog and digital worlds is
its raison dtre.51 For that reason, I look briefly at issues of ethnographic transparency,
online and off. A staff member at the hospice where I did traditional fieldwork asked me
point-blank what an English professor was doing there, rather than a healthcare
professionala good question.52 I did not reveal that I was a folklorist, but I did present my

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33

interest in storytelling as part of a medicinal and narrative approach conducted by


humanists and social scientists.53 I would do the same in an online setting.
If that staff member had asked me what my own position on deathbed visions was, I
would have said that I was an ex-Catholic, interested in spiritual issues and right living, but
probably closer to the agnostic positions of some of the hospice workers quoted here at the
present time. I was interested in hearing what people had to say about deathbed visions
and recognized that I was working through my own fear of death in doing so. In fact, I did
say that in some of the interview situations at the hospice when interviewees asked, but
not otherwise. I would say the same in an online setting.
If that staff member had asked me what conclusions I would publish as an
outgrowth of my qualitative field research there, I would not be able to answer precisely
yet. Folklorist and sociologist Gary Alan Fine has noted the tension between the idea that
research subjects have a right to know what they are getting themselves into and the
reality that ethnographers do not know what they are looking for until they have found it
(1994, 4-5). As an ethnographer, I tend toward just such grounded theory, yet recognize
that research subjects, online or off, deserve answers. In the last section below, I work
toward some of those answers, because my initial foray into cyberspace convinces me of
the richness of a joint enterprise in exploring questions about life and death, traditionally
and virtually, in as sensitive a way as possible (see Blank and Howard 2013).
Conclusions
I position my Other Worlds project in the Midwestern hospice differently than I
did before this journey straddling real and virtual space. My research had been localized in
a specific geographical setting, what media and cultural specialist Andreas Wittel would
call the field in a traditional sense (2000, 1-2), although I practiced what anthropologists
Akhil Gupta and James Ferguson defined as non-classical fieldwork, not leaving my home
base to do research in a remote geographical and cultural area but staying in the urban
location where I already lived and visiting the local research sites intermittently over some
years (1997, 19-32).54 I see the data created from qualitative face-to-face interviews with
willing staff, questionnaires completed and journal entries as deep but limited. These

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intimate ethnographies (Langlois 2008, 187-89) give me a contextual base to learn what
brought staff into hospice care, how they dealt with their patients deathbed visions, and
how they interpreted them. They are vertical cultural markers.
Yet I see that I have moved from the field to the Net (Wittel 2000, 3-5) when I
recognized that my localized project was embedded in discussions far broader than my
own in sites that have the advantage of creating far more data, graphed through time and
space, not available in any other format, despite possible issues with anonymity, deceptive
identity, and a certain a-contextualization (Garcia et al. 2009, 68-70). They are horizontal
cross-cultural markers. My review of the elite and the folk webs on deathbed visions
(which have merged in a number of ways for me as I traversed them) gives me a sense of
the importance of networking for shared references, resources, and data checks across all
lines of demarcation.
I believe, for example, that deathbed vision websites on what Ive called the elite
web, despite their agendas, do fill a gap in the anthropological, folkloristic, and medical
literature on medicine and narrative generally, and on hospice and narrative in particular,
which latter sources do not usually focus on health issues and the supernatural to my
knowledge.55 The exceptions prove the rule.56 StoryCorps recent development of its
StoryCorps Legacy Project which pairs interviewers with palliative care and hospice
facilities may move in this direction, although the interviews I have listened to online to
date are extensions of the patients life review.
I also believe that discussions on the folk web expand the concept of legend
dialectics, a process that I found submerged in the fieldwork in the everyday world of the
hospice where Other Worlds research subjects shared mostly positive experiences with
me. This research for this essay confirms what Trevor J. Blank has called the oxymoron of
traditional oral texts and performances emerging through technology (2012, 6; see also
Blank 2013a; 2015; Buccitelli 2012), here in an enhanced way that did not happen in the
questionnaire process or in face-to-face interviews in my Other Worlds field project. I,
therefore, conclude that traditional and virtual ethnography together can contribute to a
more holistic picture of deathbed visions narrative, richer than each modality of accessing

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35

return of the dead stories might yield alone, and whose complementary approaches
might compensate for the flaws in each methodology.
My virtual field research itself moved me, albeit not very far, beyond the field to the
Internet (Wittel 2000, 6). I remain a digital immigrant after all, but a more informed one. I
can now appreciate digital natives, those for whom online social media are even more
intrinsic parts of their lives, whether participants or researchers on the Internet. I have
been particularly touched by a young mans posthumous online video in which he presents
his near-death experiences and his questions about the afterlife for whoever clicks on his
YouTube site. Austin (TX) blogger Ben Breedloves presentation haunts the Internet much
as Pennsylvania State Treasurer R. Budd Dwyers televised suicide does long after his death
(Bronner 2009, 40-56), but that is another story.
For now, I am content to close this meditation on story gathering with a quote from
a hospice nurse I interviewed in the Other Worlds project. Her statement gives
researchers, older and younger, good reasons for continuing their work, online and off,
while also giving more good reasons why hospice staff arent always talking. They simply
dont have the time:
I am glad that you are collecting this information Lots of people in
hospice would write that kind of book if we would just get together and
take the time. A couple of people have given us [blank] books that we should
write down the stories as they happen but we just have not done it. I dont
know how to integrate it into hospice work because it would be meaningful
to a lot of people, but you know you just get wound up in it; its tiring, its
exhausting, its gratifying, its genuine, its intense. (OWIIA: 014)

JANET L. LANGLOIS received her Ph.D. in Folklore Studies at Indiana University, and is an
associate professor in the English Department at Wayne State University, currently on
medical leave. Her teaching, research interests, and publications focus on narrative, especially
fairy tale, urban legend, rumor, personal experience narrative, and oral history analyzed in
context through various cultural approaches. She is also interested in ethnographic questions,
both methodological and theoretical, online and off. A current book project, Other Worlds, is
an ethnographic study of supernatural experience narratives in health situations from which
this article is drawn.

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Acknowledgments
I would like to thank all the persons interviewed, especially the hospice staff and
volunteers discussed here. My thanks also go to all the colleagues who have helped me
through the years of research for the longer project and through the writing of this essay.
Id like to particularly note Linda Dgh, my legend mentor at Indiana University, and David
J. Hufford who gave me my first reading list on hospice literature. Diane E. Goldstein,
Elizabeth Tucker, and Yvonne J. Milspaw heard presentations, read drafts of this essay, and
gave me most useful suggestions. Trevor J. Blank was tireless in supplying me with folklore
and digital culture references. I thank him and the NDiF anonymous reviewers for their
constructive criticism. Will all help me with the book manuscript next?

Notes
This article is a development of a paper presented at the International Society for
Contemporary Legend Researchs Perspectives in Contemporary Legend Conference in
Harrisburg, PA, May 26, 2011.
1

See Blank (2007; 2009; 2012; 2013a; 2013b); Blank and Howard (2013); Ellis (2002);
Foote (2007); Frank, Russell (2011); Hine (2000); Howard (2008a; 2009; 2011); Kinsella
(2011), for example.
2

These are overlapping terms, with slightly-different meanings depending on the field of
study, which I use interchangeably here.
3

The title of the full project, Other Worlds: An Ethnographic Study of Personal Accounts
of the Return of the Dead and Other Mystical Experiences in Health-Related Contexts (IRB
#069403B3B), is shortened to Other Worlds in this essay. See Appendix A for Part IIA
Research Informed Consent Form and Appendix B for IIA Questionnaire for Hospital and
Hospice Staff and Volunteers Form referred to in this essay.
4

I have not interviewed terminally-ill patients because they are classed as vulnerable
subjects in IRB guidelines, and I am not a trained health professional.
5

The Return of the Dead is a general theme in supernatural legendry around which
narrative motifs cluster. Folklorist Louis C. Jones writes: It would be an endless task to
present the wide variety of reasons why the dead return, but perhaps a little sampling will
give some idea. After examining hundreds of accounts of ghosts, it seems to me that these
reasons fall roughly into five categories: they come back to re-enact their own deaths; to
complete unfinished business; to re-engage in what were their normal pursuits when they
were alive; to protest or punish; or, finally, to warn, console, inform, guard, or reward the
6

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37

living (1977 [1959], 19). Motif category E200-E599 Ghosts and Other Revenants contains
both E200-E299 Malevolent return from the dead and E300-E399 Friendly return from the
dead. See Thompson (1960).
The Other Worlds book-length project is based on three fieldwork situations: Part I
questionnaires and/or interviews with a general convenience population willing to speak
on their mystical health experiences (30 participants), Part IIA questionnaires and/or
interviews with hospice, hospital, and nursing home staff (26 participants), and Part IIB
questionnaires and/or interviews with bereavement and grief support groups (which did
not materialize in the group settings but individually). Seven Other Worlds field journals
and other ethnographers and students archived data are additional primary source
material.
7

The list includes, but is not limited to: spiritualists, mediums, psychics, psychical
researchers, parapsychologists, near-death researchers, folklorists, anthropologists,
sociologists, communications specialists, ministers, religious studies scholars,
psychologists, psychiatrists, bereavement counselors, death and dying specialists, hospice
and palliative care doctors and nurses, social workers, cardiologists, neuroscientists,
medical humanists, and medical ethnographers among them. Although I cannot address all
their research here, I will reference specific works within the contexts of relevant
discussions throughout this essay.
8

See Bennett (1999) and Rees (1971), for example.

See Fenwick and Fenwick (1997); Holden et al. (2009); Moody (2001[1975]); Moody and
Perry (1993); Ring (2006), for example.
10

David J. Hufford notes that death omens and deathbed visions may be a part of the NDE
class or they may constitute a separate class of core experiences (1995, 35). A 2012
bioethics forum held at the University of Wisconsin at Madisons BioPharmaceutical
Technology Center Institute, presented deathbed visions as one kind of NDE experiences,
for example. See: http://www.btci.org/bioethics/default.html.
11

See Barrett (1986 [1926]); Curtis (2012); Kessler (2011); Kbler-Ross (1991; 1999);
Mendoza (2008); Osis and Haraldsson (1997 [1977]), for example.
12

Staff includes doctors, nurses, certified nurse assistants, social workers, ministers,
spiritual counselors, psychologists, administrators, managers, etc. working in facilities
caring for terminally-ill patients.
13

14

There are over 400,000 results as of this writing.

Code refers to the twelfth questionnaire and/or interview transcript of Other Worlds
Project, Part IIA (see Appendices A and B). Although I have not been able to check this
15

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systematically, I believe that hospice nurses completed the questionnaires as if they were
patients (pt) charts.
Many researchers of deathbed visions refer to Barretts (1986[1926]) seminal work. I do
so also because of the ethnographic quality of his reporting of this moving case. Like many
present NDE researchers, he wished to put the study of these phenomena on a scientific
basis so founded The Society of Psychical Research in 1892.
16

Religious studies scholar Carol Zaleski brought digital and spiritual other worlds
together for me when she thanked the staff of the Harvard Arts & Sciences Computer
Services for helping her find her way in the labyrinthine other world of electronic text
processing in her acknowledgements for Otherworld Journeys: Accounts of Near-Death
Experience in Medieval and Modern Times (1987, v). When I read her thanks years later, the
convergence made sense, and reminded me of folklorist Linda Dghs exhortation that
researchers of the legend must try to enter the labyrinth of the alternative communicative
vehicles that legend tellers use now, including the Internet, for fuller understanding of the
genre and its meanings in modern life (2001, 304).
17

See Blank (2012; 2013b; 2015) and Howard (2005; 2008a; 2012; 2013) for fuller
discussions of the institutional and vernacular uses of websites for hybridized folk
communication that I find at the heart of my essays double consciousness.
18

I selected these three websites to begin my digital ethnographic journey because they
were among the first listed in the initial Google search results, which I assumed signaled
their particular relevance to my area of interest, and because I knew something of related
analog studies for comparison and contrast.
19

See Foote (2007) and Garcia et al. (2009, 62-64) for additional insight into iconic memes
in digital culture.
20

Note that Barbato (1999) connects deathbed visions (DBV) and bereavement accounts
(ADC) here for grieving persons.
21

I used variations of the Barbato teams questionnaire, Survey of Unusual Happenings


and Experiences at or around the Time of Death, with permission, in my Other Worlds
field research.
22

Variously called the mind/body problem or the materialist/dualist question, the


debate that runs through this essay centers on the question whether the mind is part of the
brain, so that consciousness does not survive a persons physical death (materialist) or
whether the mind and the brain are separate (dual) so that consciousness may survive a
persons physical death (non-materialist).
23

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39

See Fenwick and Fenwick (1997); Greyson and Bush (1992); Parnia (2014); Roach
(2005).
24

The websites homepage has frequently updated links to recent cognitive studies,
including the major international and interdisciplinary Human Consciousness Project the
Foundation sponsors, designed to explore what had been traditionally considered a
matter for philosophical debate, but through advancements in modern science and in
particular the science of resuscitation is now open to scientific analysis. The AWARE
(AWAreness during REsuscitation) study, in particular, is a long-term program, the first
sponsored by the Human Consciousness Project, which aims to study the relationship
between mind, consciousness, and brain in patients who undergo cardiac arrest and
clinical death. The results of the AWARE study are not yet posted on the site as of this
writing.
25

26

Deathbed visions are included in the NDE category on this site.

All quotations concerning the Deathbed Visions eQuestionnaire come from online
statements no longer available.
27

Deathbed visions (DBV) are a part of the broader category of Deathbed Phenomena
(DBP).
28

See also Cole (1992) and Rodriquez (2009) for studies of hospice narratives about
patients choosing or knowing time of death.
29

Discussion of animals, insects, and birds occurred in my Other Worlds field research in
bereavement narratives as the recently-deceased returning in other life forms, not in
deathbed visions. Staff did discuss spectral children, however, which will be a focus later in
this article.
30

There are no discussions of cold spots by hospice staff or families in my research notes,
but discussion of air movement or electricity or energy at the moment of a persons death
was noted in several instances.
31

32

See Kbler-Ross (2000 [1971]).

In Visionss Epilogue, Kessler refers to the Camden Palliative Care studys finding of
hospice and hospital staff feeling ill-prepared for and uncertain how to deal with their
patients deathbed visions (152). He reiterates the fact that medical personnel, patients and
their families are reluctant to speak of these experiences for fear of ridicule, and that a
fuller understanding of the dying process would bring peace for all at the end of life (15255).
33

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See Blank (2013a; 2013b; 2015); Buccitelli (2012); Howard (2005; 2008a; 2008b; 2012;
2013).
34

35Recent

examples of the dialectics include best-selling works by Alexander (2012); Burpo


and Vincent (2010); Parnia (2014) (dualist), and Sachs (2012) (materialist). A March 26,
2013 episode, Is There Life after Death? on the Science Channels Through the Wormhole
with Morgan Freeman is framed within these dialectics.
Like David Kessler (2011), I have made a choice not to discuss sites constructed by
mediums and psychics at the present time, but these sites should be examined and
evaluated at some point.
36

The archived posts on this thread remain online as of this writing. I use verbatim
quotations sparingly and conversation summary to protect posters if possible.
37

To clarify his openness and invitation for communal discourse, the poster included the
phrase Ask me anything, his spelling out of the more usual acronym AMA, in his initial
comments.
38

The Health Insurance Portability and Accountability Act (HIPAA) is the federal law
enacted in 1996 to protect patients personal medical information through mandating
medical facilities compliance with its rules.
39

Brian Short, Allnurses.com Inc.s CEO and only full-time employee as of 2012, quit his job
as a critical-care nurse at Hennepin County (MN) Medical Center to devote full time to his
social networking site that has grown to over three million users monthly (see Grayson
2012).
40

Although all archived forum thread locations are numbered for users ease of access in
this website, I refrain from listing them, and also use verbatim quotations sparingly and
conversation summary to protect participants if possible. The website refers to forums as
discussions, and I follow that terminology.
41

See Labov and Waletzky (1967, 32-37) for their early presentation of the formal features
of personal experience narratives I draw on here and later in this essay.
42

See folklorist Yanna Lambrinidous discussion of the deathbed visions of a patient who
saw the comforting vision of her deceased mother and also heard threatening voices of
those she thought were trying to kill her as quoted in Barnard et al. (2000, 97-119, 418).
See also Bush (2012), Greyson and Bush (1992); Rawlings (1993) and Roach (2005).
43

This account is more in line with Osis and Haraldssons (1997[1977) findings that
younger Hindu patients were often frightened by Yamdoot (Yama), a Hindu god of death,
coming for them.
44

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41

This mediating role is in line with the advice given to caretakers by hospice nurses
Maggie Callanan and Patricia Kelley (1992) in their influential guide, Final Gifts:
Understanding the Special Awareness, Needs, and Communications of the Dying. Callanan and
Kelley advise in their chapter, Being in the Presence of Someone Not Alive, that hospice
workers listen to their patients and recognize that, whatever their own beliefs, their
patients do not feel alone when these visions occur, and that is a good thing whatever their
provenance (97).
45

46

See also Blank (2013b); Buccitelli (2012); Howard (2008b).

See the next section on ethnographies for further discussion of inhibiting factors in
traditional field interviews.
47

See Bennett (1999, 115-37); Dgh (2001); Dgh and Vzsonyi (1973); Ellis (2002);
Goldstein (2007, 60-78); Langlois (2005); Tucker (2009).
48

I have used Trevor J. Blanks statement that online communication can be distinct from
face-to-face communication, although related, so it is not always entirely transferable or
functionally replicable (2012, 7) to my own purposes here.
49

Hospice workers experience this loss universally by the very nature of their job, as often
do related medical personnel such as paramedics and hospital emergency room staff.
Interestingly enough, the Ask the Hospice Worker original poster criticized paramedics as
paramedics criticized firefighters and hospital emergency room personnel for their
incompetence in aiding patients at deaths door (Tangherlini 1998, 3-31), and as one poster
in allnurses.com indirectly criticized doctors who do not interact with their patients as
fully as nurses do.
50

I believe that I am discovering the hybridization of folklore, the blending of analog and
digital forms of folklore and vernacular expression in the course of their dissemination and
enactment (Blank 2013a, 116), in spite of myself.
51

I do not have the healthcare credentials that the research teams outlined earlier in this
essay had, or those of folklorists David J. Hufford, former director of Medical Humanities at
the Hershey School of Medicine at Pennsylvania State University (1982; 1995); Yanna
Lambrinidou, who worked with a hospice team, and actually moved into palliative care
herself (Barnard et al. 2000); or of Erika Brady (1987), who was a hospice chaplain before
entering the field, for example.
52

See Barnard et al. (2000); Frank, Arthur (1997); Gelfand et al. (2005); Hufford (1982);
Hunter (1991), for example.
53

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Gupta and Fergusons (1997) critique of classic field science is a prelude to virtual
ethnography in a sense because in it they advocated a loosening of ethnographers focus on
a single geographical and cultural location.
54

See Barnard et al. (2000); Frank, Arthur (1997); Gelfand et al. (2005); Goldstein (2004);
Hunter (1991); Kitta (2011); Mattingly (2000); Parker (2007); Tangherlini (1998); Zeitlin
and Harlow (2001), for example.
55

See Brady (1988; 2001); Cole (1992); Hufford (1982; 1995); Mendoza (2008); Rodriquez
(2009), for example.
56

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Langlois They All See Dead People

APPENDIX A
(Other Worlds IIA Research Informed Consent Form)

Research Informed Consent


Title of Study: Other Worlds: An Ethnographic Study of Personal Accounts of the Return of
the Dead and Other Mystical Experiences in Health-Related Contexts
Part II A Hospital/Hospice Staff and Volunteers
You are being asked to be in a research study of accounts of mystical experiences in healthrelated contexts because you are either a hospital or hospice staff member or volunteer who may
have observed such incidents concerning your patients and/or their relatives, friends and
caregivers in end-of-life situations. Mystical experiences may include, but are not limited to, a
sense of the presence of deceased persons or spiritual beings, premonitions of death, and dreams
or visions.
The study is being conducted at Wayne State University, Detroit, MI, at [hospice name and
location] and at other off-campus sites. Please read this form and ask any questions you may
have before agreeing to be in the study.
The study is being conducted by Janet L. Langlois, Ph.D., English Department, and a Center to
Advance Palliative-Care Excellence (CAPE) Associate, Wayne State University, Detroit, MI.
Study Purpose:
The purpose of the study is to document and analyze mystical narratives in health-related
contexts such as hospices, hospitals and home settings. The study is related to other qualitative
studies in the fields of medicine and humanities that evaluate the roles of storytelling in healing,
illness, and end-of-life situations. Research results will be published in article and book form.
The estimated number of study participants to be enrolled at Wayne State University and
[participating hospice] is about 100 as well as about 200 throughout the U.S.
Study Procedures:
If you take part in the study, you will be asked to take a brief survey questionnaire and to have a
follow-up interview with your permission. The questionnaire will take about 20 minutes, the
follow-up interview about one hour. You will be asked about the mystical experience or
experiences you noted without revealing your patients identities, how you interpret the event or
events, your background information including how and why you have come to your present
position in a hospice or hospital unit, and situations in which you have or have not spoken about
your experience to others. You have the option of not answering some of the questions and
remaining in the study. Your permission will be asked to audio-tape your follow-up interview,
and the tape will be transcribed.
You have the option of completing the questionnaire only, or having the interview only.

Submission/Revision date: January 23, 2013


Protocol Version #: 069403B3E
Page 1 of 3

Participant Initials_______

Langlois Appendix A [Other Worlds, Part II A Informed Consent Form]

Benefits:
The possible benefits to you for taking part in this study may include alerting you and other
caregivers to these mystical experiences, or confirming your own observations of them, so that
you can respond in medically-appropriate ways. Additionally, information from this study may
benefit other people now or in the future. Research presentations and publications will be
donated to your institutions library.
Risks:
By taking part in this study, your risks are minimal, but may include recognition of job stress.
There may also be risks involved in taking part in this study that are not known to researchers at
this time.
Compensation:
You will not be paid for taking part in this study.
Confidentiality:
All information collected about you during the course of this study will be kept confidential to
the extent permitted by law. You will be identified in the research records by a code name or
number. Audio tapes will be kept in locked cabinets, and will be destroyed three years after the
completion of the study. Information that identifies you personally will not be released without
your written permission. However, the Human Investigation Committee (HIC) at Wayne State
University or federal agencies with appropriate regulatory oversight may review your records.
Voluntary Participation/ Withdrawal:
Taking part in this study is voluntary. You may choose not to take part in this study, or if you
decide to take part, you can change your mind later and withdraw from the study. You are free
to not answer any questions or withdraw at any time. Your decision will not change any present
or future relationships with Wayne State University or its affiliates or other services you are
entitled to receive.
Questions:
If you have any questions now or in the future, or if you think that you need to report a research
related injury, you may contact Janet L. Langlois or one of her research team members at the
following phone number (313) 882-5657 or at ad5634@wayne.edu. If you have questions or
concerns about your rights as a research participant, the Chair of the Human Investigation
Committee can be contacted at (313) 577-1628.

Submission/Revision date: January 23, 2013


Protocol Version #: 069403B38
Page 2 of 3

Participant Initials_______

Langlois Appendix A [Other Worlds, Part II A Informed Consent Form]

Consent to Participate in a Research Study:


To voluntarily agree to take part in this study, you must sign on the line below. If you choose to
take part in this study, you may withdraw at any time. You are not giving up any of your legal
rights by signing this form. Your signature below indicates that you have read or had read to you
this entire consent form, including the risks and benefits, and have had all of your questions
answered. You will be given a copy of this consent form.

________________________________________________
Signature of Participant/Legally Authorized Representative

_____________________
Date

________________________________________________
Printed Name of Participant/ Authorized Representative

_____________________
Time

________________________________________________
Signature of Person Obtaining Consent

____________________
Date

________________________________________________
Printed Name of Person Obtaining Consent

____________________
Time

** Use when participant has had consent form read to them (i.e., illiterate, legally blind,
translated into foreign language).

Submission/Revision date: January 23, 2013


Protocol Version #: 069403B38
Page 3 of 3

Participant Initials_______

Langlois They All See Dead People

APPENDIX B
Other Worlds IIA (OWIIA) Questionnaire for Hospital and Hospice Staff and Volunteers Form
Questionnaire for Hospice Staff & Volunteers (Part IIA), Page 1 of 5
1. Todays date (Month/day/year):___________________________________________
2. Your background:
Sex: __________________
Age: __________________
Education (Highest Level):______________________________________________
Ethnic group/s: ________________________________________________________
Religion: _____________________________________________________________
3. Current job title/s (Check all that apply):
o Attending Physician
o Bereavement Coordinator/Manager
o Hospice Medical Director
o Hospice Doctor
o Hospice Nurse
o Nursing Assistant (CENA)
o Pastoral Counselor
o Social Worker
o Social Work Assistant
o Support Staff
o Volunteer (specific duties): __________________________________________
o Other, please note title: _____________________________________________
4. How long have you worked at the present facility? ________________________
5. How long had you worked at another similar facility or position? ____________
6. Please briefly describe why you entered hospice work?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
7. About how many patients have you treated/attended during a terminal illness? ______
8. About how many patients have you witnessed in the active phase of dying or at the
moment of death? ____________________
9. Did any patients seem to see or sense persons not present to other observers?
o Yes
Estimated number of cases: _______________
o No
Skip to #12.

Other Worlds Questionnaire, IIA (OWIIA), Page 2 of 4

10. Were the persons present to the patients but not to other observers (check all that
apply and specify who if possible):
o someone living? ___________________________________________________
o someone dead? _____________________________________________________
o a religious figure or mythological being? ________________________________
o any combination of above? ___________________________________________
o Unidentifiable?
11. Please briefly describe one typical case you observed of persons present to the patient
but not to other observers:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
12. Did any patients seem to experience being in surroundings other than their homes,
hospice or hospital facility?
o Yes
Estimated number of cases: ______________________________
o No
Skip to # 15.
13. Were the surroundings (check all that apply and specify where if possible):
o Familiar to patients? _______________________________________________
o Earlier in time? ___________________________________________________
o Other Worlds in a religious sense? __________________________________
o Any combination of the above? ______________________________________
o Other situations (specify)? ___________________________________________
o Unidentified surroundings? __________________________________________
14. Please briefly describe one typical case you observed of patients sense of being in
other surroundings:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

Other Worlds Questionnaire, IIA (OWIIA), Page 3 of 4


15. Have you had any patients who seemed to experience other mystical or unusual
events at or before the time of their deaths (premonition of death, waiting for relatives or
friends to come before dying, dreams, etc.)?
o Yes
Estimated number of cases: ____________________
o No
Skip to # 17.
16. Please briefly describe one typical case that you have observed:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
17. Have you seen or heard that someone else (relative or friend of patient, staff member,
etc.) seemed to experience something mystical or unusual around the time of, or after the
death of, a patient (dreams, visions while awake, sense of the presence of deceased
person, unusual occurrences, familiar smells, sounds, etc,)?
o Yes
Estimated number of cases: _________________
o No
Skip to #19.
18. Please briefly describe one typical experience of a person not the patient:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
19. Please briefly describe how you have interpreted or explained any of the experiences
described above. What did you believe they meant to the patient, family, friends or
caregivers?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

Other Worlds Questionnaire, IIA (OWIIA), Page 4 of 4


20. Have you yourself experienced something mystical or unusual around the time of, at,
or after the death of a patient, friend or relative?
o Yes
o No

Estimated number of incidents: _______________


Please skip to #22

21. Please briefly describe your experience:


________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
22. If you have spoken to someone about any of the experiences above, please briefly
describe the situations and to whom you spoke:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
23. In thinking over these questions, do you have any further comments you would like to
make?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
24. May the PI, or a research assistant for volunteers, contact you for a follow-up
interview on topics above?
o Yes
See below.
o No
THANK YOU FOR YOUR PARTICIPATION.
If you have agreed to a follow-up interview, please leave a contact phone number, email
address, or mailing address here:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________